World AIDS Day: Remember When It Used To Be Important?

I remember December 1st as a day when people gathered in terror and grief with candles and tears listening to words that couldn't begin to touch the pain and anger and sadness.

I remember when it was a time for all kinds of people to gather together, people that probably wouldn't be in the same room for any other reason. At World AIDS Day services in the early Nineties, I remember seeing queer activists, quietly closeted gay men and women, Episcopal and Catholic priests, Native American leaders, Protestant ministers, atheists, nuns and agnostics. I saw elected officials, Republicans and Democrats, wheelchair-bound elderly, parents, children, nurses, doctors, cowboys, lawyers, accountants, little old ladies and, once, a rodeo clown. All coming together, all looking for comfort and hope and compassion among others who could maybe understand.

We don't really do that now. And maybe it's okay that we don't.

Maybe it's good that the terror I remember so vividly on the faces of close friends and complete strangers is no longer there. Maybe it's good that people aren't dying so fast and so painfully, isolated and afraid. Maybe it's good that we're not so traumatized by fear and grief and anger.

Maybe.

Is terror a good thing? Is a painful death beneficial? Is emotional trauma something to be longed for?

No. But I have to say, those scenes of suffering and bravery certainly helped capture the zeitgeist of the Eighties and Nineties. It helped keep AIDS in our collective consciousness. Drama and fear and compassion-fueled activism and grassroots movements and the formation of community-based organizations. AIDS was overwhelmingly real. It was dramatic. It went to the Oscars, the Emmys, the Grammys and the Tonys. And it won. More than once.

So I'm not sure if it's a good thing that HIV isn't such a drama queen anymore. Not to say that I want people to suffer needlessly. I don't. I just happen to think we're not paying attention because it's no longer hip, sexy, avant-garde and noble to do so. I think that our short attention spans need to be constantly reminded. And there's really not a lot of spectacular theatrics to grab our attention today. Well, not compared to the past.

But, trust me, it's still there. There are some rather dramatic facts to consider:

People are still being infected. In the U.S. there are over fifty thousand new diagnoses a year. The CDC estimates that one in five persons with HIV doesn't know it. That means they may not be protecting their sexual partners out of ignorance. That means more HIV.

Gay men, and/or Men who have Sex with Men (MSM) account for more than half of all new infections each year, and MSM is the only risk group in the country whose infections are increasing. MSM account for nearly half of all persons living with HIV in the United States today. Nearly half. And those are just the ones we know about. That means that for all the talk we hear about "AIDS is not a gay disease," it is. That means sexually active MSM are having sex with HIV+ partners statistically more often than any other members of the general population- and being infected. HIV significantly and dramatically lives in the bodies of gay men.

HIV strains the budget of every state in the Union. So much so that states have cut or are considering cuts in funding to drug assistance programs and other HIV support and prevention services. These services keep people alive at a cost of hundreds of millions of dollars a year. More money is needed with every new infection. That money comes out of your taxes.

People are still dying. Yes, the drugs help, and people with HIV are living longer lives, but the drugs don't always work, and HIV mutates. Our immune systems are under a great deal of strain and one serious opportunistic infection can kill. I lost a friend just this year.

It's not over. Families are still being traumatized and our community is being hurt by this epidemic. Here in Montana, with its relatively miniscule gay population, three new members joined my HIV+ support group last month, all gay men in their twenties - kids, really. All facing a lifetime radically different than they had hoped for.

And those are just some of the many points to consider.

Is it good that people are no longer dying and suffering in such huge numbers? Yes.
Is it good that we no longer gather in great numbers, sharing strong emotions, standing hopefully resolute in the face of pain and suffering and memory? I don't think so.

Personally, I need to remember these facts and these people, because they're part of my history, my community, my country and my world. I need to be reminded that my compassion, my voice and my heart are all still relevant. I need to be reminded that I'm not alone, I need to remind others of the same thing. And I think doing it once a year is the least I can do.

That's why I'll be going to a World AIDS Day service this year. That's why I'll be wearing a red ribbon, holding a candle in the dark, listening to words of grief, bravery and encouragement. To remember, to remind, to regroup.

Leave a comment

We want to know your opinion on this issue! While arguing about an opinion or idea is encouraged, personal attacks will not be tolerated. Please be respectful of others.

The editorial team will delete a comment that is off-topic, abusive, exceptionally incoherent, includes a slur or is soliciting and/or advertising. Repeated violations of the policy will result in revocation of your user account. Please keep in mind that this is our online home; ill-mannered house guests will be shown the door.

Thanks for writing this, and for pointing out the vastness of the epidemic.

I know that much of my discomfort with the current AIDS Day ritual is that it has been appropriated by the pharmaceutical companies, who also engage in the "give us a dollar and we'll donate a dollar" campaigns around this time of year. You have to read the fine print to know that the amount is capped, to a minuscule dollar sum that wouldn't even be a drop in their budgets and there's no transparency as to where the money really goes or if it does any real good.

I try, when I can, to mark it in more intimate ways or at events where there is some attempt to remember the history of AIDS and a clear, hard look at where we are today (nearly 34 million worldwide). I taught an essay on matters related to AIDS activism a few years ago, and was pleasantly surprised to find that students, freshmen mostly, knew about AIDS and had no stereotypes about people with AIDS.

BUT...their sense of the history of AIDS in this country had been formed by school curricula in this way: AIDS came to us in the 1980s, and killed many people. Then the good people in the CDC, the pharmaceutical companies, and the government set about to the noble task of developing drugs and research and everything is all better now. And anyone who discriminates against a person with AIDS is just a bigot.

I liked the last part, but the first two pained me (and we had an interesting time from there on with the history of AIDS activism).

Thank you so much for this. It means so much. I hope many people read this. I'm so scared my friends have become complacent. I came out REALLY young, and I had a lot of older gay friends who had lived through the height of the crisis. Friends my age and younger sort of shrug their shoulders. They never knew anyone who died, and they all look at me like I'm a drama queen when I talk about safe sex, getting tested, and anything else old-queen related.

A few months ago I put together an informational gathering for my friends about safe sex. Through my friend at the County Health Department who has a grant for this, I was able to score $10 gift cards to Best Buy, pizza, Jimmy John's catering, pop, chips and offer all of this up for free. I thought "the free food alone should get dozens there. I'll be turning them away. The $10 gift card should just sweeten the deal!"

ANY hint that there might be something serious talked about makes them run for the hills. I was BEGGING people to come the day of. I got 11 people there including my boyfriend and I, and a monogamous married Quaker couple that had stayed virgins until their wedding night (how f*cking cute, right?). The location was above the town's favorite bar, no less. I offered a round of drinks afterword in my final push. I contacted close to 100 friends about it in the weeks leading up to it. I got 10 to show.

That scared me.

World AIDS day I get permission to be as obnoxious as I can be about it, drag them to go get tested and get the lectures and the free condoms, and hope that this year it will stick...

Yesterday, I dragged a half-dozen friends over to get tested (for free, no less, when I first started testing, I couldn't find anywhere that did free testing... or anywhere that gave me the results that same day), get the free condoms and the lectures. No other day affords me the chance to do this. Not surprisingly, though--as reluctant as they all were to go get tested in the first place--they were all very relieved after. What to take from that, I don't know.

I can appreciate your thoughts and frustrations.
I'm not sure what to make of it all either except I just continue to do what can, speak the truth as I see it and respect the people I encounter, as I suspect you all do...
One thing I've learned as a human being and a therapist is that people are very good at denying or avoiding the thing that scares them the most- I did it for years. That's all. I often say that for 20 years I was so terrified of getting AIDS, that, when I was diagnosed with AIDS there wasn't anything else to be scared of.
Your friends may just be good at blocking....
But one resource that I think is helpful for every one is www.hivtest.org
It's a national locator for HIV testing sites, and has been helpful to recommend to friends who are not local.

Thank you, seeing friends die up close and personal in the late 1980's and 1990's before there were anti retroviral drugs, cocktails of drugs or anything other than treating the pneumonia, before the wasting and dementia took it's toll there is not enough to be said about the wisdom of safe sex and remembrance of this day.

I also do not care if the pharma companies make a profit,(I hope they do) but find a damn cure.